Dystonia Awareness Month

  • Thank you to everyone who helped spread awareness this September by sharing our social media posts, telling friends and family about dystonia, and reaching out to encourage people living with dystonia.
  • Although Dystonia Awareness Month is over, you can spread awareness all year round! Stay engaged with Down with Dystonia and other dystonia organizations on social media, share our content, and spread awareness in your community!
  • Join us for the Dance with Dystonia challenge beginning November 1st. Help raise awareness about dystonia and funds to support Down with Dystonia programs in 2022!

September is Over, but Our Mission Continues

Image of blue ribbon with words "Keep Calm and support Dystonia Awareness"In the United States, approximately 250,000 people have been diagnosed with dystonia. This makes dystonia the third most prevalent movement disorder. However, patients and medical professionals agree that dystonia awareness is significantly lacking compared to other movement disorders, such as Parkinson’s disease. Raising awareness for dystonia is crucial to furthering medical research and finding better treatments as we eventually seek a cure.

Art Kessler, the President of the Dystonia Medical Research Foundation, recently said “individuals often suffer years without proper treatment, and this can have devastating effects on employment, schooling, and overall quality of life. Delayed diagnosis also prevents people from having access to the information they need to make informed treatment decisions and peer support from others who understand the challenges of living with dystonia.” An accurate diagnosis often takes years because there is a lack of awareness about dystonia in the medical community and in the general public. 

Dystonia awareness month occurs in September every year – a month dedicated to spreading awareness about dystonia beyond medical specialists and people diagnosed with the condition. Our goal is for the majority of adults in our communities to become as aware dystonia and its symptoms as they are of Parkinson’s and Huntington’s diseases. When conditions and symptoms become familiar, people who begin experiencing symptoms are more likely to seek treatment and receive an accurate medical diagnosis. Familiarity also makes life easier for people living with dystonia. It becomes easier to find a network of people living a similar experience, the sense of “otherness” is diminished, and the communities where we live become more inclusive and accommodating. If you want to learn more about how you can help spread awareness, check out the social media channels for Down with Dystonia and other dystonia nonprofit organizations. There was a ton of great content posted throughout the month, and you can still spread awareness by sharing the posts with your social networks.

September is over, but dystonia awareness will continue all year! Help us reach spread the word by following dystonia nonprofit social channels, liking and sharing our posts, and connecting with Down with Dystonia as we launch a variety of community awareness campaigns in 2022. A few of the campaigns that will continue to spread awareness and put on activities throughout the year include:

  • The Dance with Dystonia Challenge: Launching November 1, this challenge asks you to take a video of yourself dancing to the music of your choice. Dress up in a costume. Be weird! Get funky! Be you! Share your video to social media and tag/challenge at least three of your friends. When you post the video, make a donation to Down with Dystonia to support programs for people living with dystonia and awareness campaigns in 2022.
  • Reach Out, Reach All: This campaign focuses on bringing the dystonia community together through a variety of activities including film, animation, podcasts and webinars.
  • Dystonia Moves Me: The Dystonia Medical Research Foundation’s annual awareness campaign encourages volunteers to promote dystonia locally within their communities and on social media.
  • #EscapeDystonia: The hashtag campaign was initiated by Dystonia Europe for dystonia awareness month 2021, encouraging those with dystonia to speak out about what they do to feel better and engage with the campaign through social media.